Understanding Premature Deaths and Improving Outcomes

Recent calls to better understand the premature deaths of care experienced people have highlighted an important issue. Any serious attempt to improve outcomes for care experienced babies, children, young people and adults should welcome that discussion. The question is not whether Scotland should seek to understand these deaths better. The question is how best to do so, what information would help prevent future harm and, most importantly, what action should follow.

As an independent body, the Oversight Board reports on progress towards keeping The Promise, identifies barriers and issues calls to action where further change is required. From that perspective, the discussion about premature deaths highlights a wider issue that has featured repeatedly in our work: Scotland still lacks some of the evidence needed to understand outcomes properly and drive the action required to keep The Promise for care experienced people.

There is also a need for clarity about what is meant by premature death. The term could apply to babies, children and young people who die before adulthood. It could apply to care leavers and young adults. It could also refer more broadly to deaths that occur earlier than would be expected, or deaths that may have been preventable. These distinctions matter because different definitions lead to different data, different conclusions and different actions.

Scotland is not starting from a blank sheet of paper. Indeed, there are examples where concerns about data and understanding have already led to improvement. In its first report , the Oversight Board highlighted the importance of understanding the deaths of care experienced children and young people. The National Hub for Reviewing and Learning from the Deaths of Children and Young People now collects national data on the deaths of all children and young people in Scotland, including care experienced children and young people up to 26 where they are receiving aftercare or continuing care. That does not mean everything is resolved, but it does show that Scotland can strengthen its evidence base when a gap is identified and there is a collective commitment to addressing it.

That matters because discussions about data are often framed as a choice between collecting more information and collecting less. In reality, the more important question is whether Scotland is gathering, linking and using information in a way that helps it learn and act. A figure on its own can tell us that something has happened. It cannot explain why. Understanding circumstances, identifying patterns and recognising opportunities for earlier intervention are what allow policymakers, practitioners and services to respond effectively. Without that, additional data collection risks producing more statistics without necessarily producing greater insight.

The challenge therefore is not simply one of mortality. It is part of a wider question about how Scotland understands outcomes for care experienced people. For several years, the Oversight Board has highlighted gaps in the evidence available to assess progress and understand outcomes. Those gaps affect scrutiny, but they also affect decision-making. If Scotland cannot clearly identify what is working, where outcomes are improving and where people continue to experience disadvantage, it becomes harder to target support, assess impact and determine whether change is reaching those who need it most.

Children looked after at home provide perhaps the clearest example. Despite representing a substantial proportion of children receiving care and support, Scotland still cannot answer some basic questions about longer-term outcomes for this group with any great confidence. The Board has raised concerns about these evidence gaps for several years because they make it difficult to assess progress with confidence. Our recent call for a longitudinal study of children looked after at home reflects that longstanding concern and the need for a stronger understanding of how experiences in childhood influence outcomes later in life.

The discussion about premature deaths raises many of the same issues. There are areas where Scotland may already hold information that could improve understanding if it were collected, linked or analysed differently. Drug-related deaths provide one example. Scotland already maintains a National Drug-Related Deaths Database containing extensive information about people's circumstances, service involvement and contact with public services. Yet care experience status does not appear to be routinely recorded.

If Scotland wishes to understand whether care experienced adults are disproportionately represented among drug-related deaths, it seems sensible to first consider how existing datasets could be strengthened before creating entirely new systems. Similar questions arise in relation to suicide, homelessness-related deaths and other areas where there are known concerns about vulnerability and disadvantage.

However, better data is necessary but not sufficient. Scotland already knows a great deal about some serious national challenges, including drug-related deaths, and that knowledge has not been enough on its own to produce the change required. Measuring the problem is not the same as changing it. Any new or improved data collection must therefore be designed with a clear route to action. It should help answer what is known, what is not known, what that tells us and, most importantly, what should be done differently as a result.

That matters because improving data is not a neutral or cost-free exercise. It takes time, effort and resource, so it has to be focused on the right questions. The aim should not be to create more data for its own sake, but to identify where better information would help Scotland make different decisions, strengthen support and prevent future harm.

The current discussion presents an opportunity to build on progress that has already been made. The Oversight Board believes Scotland should:

• Review what information is already collected regarding premature deaths and serious harms experienced by care experienced people and identify where genuine gaps remain.
• Be clear about definitions, including whether the focus is children and young people, care leavers, adults, preventable deaths or premature deaths more broadly.
• Explore the incorporation of care experience status into existing national datasets where there is a clear rationale, including drug-related deaths and other areas of known vulnerability.
• Improve data linkage and analysis across existing systems to support learning, accountability and prevention.
• Commission the long-called-for longitudinal study of children looked after at home.
• Ensure any new data collection is linked to decisions, interventions and accountability, rather than simply producing further evidence of known failure.
• The purpose of collecting information should not be to produce a headline figure. It should be to improve understanding, support better decisions and increase the likelihood that future harm can be prevented.

Behind every discussion about data are babies, children, young people and adults whose lives matter, and families, carers, friends and workers who are left trying to understand what happened. If Scotland is going to ask those questions, it has a responsibility to make sure the answers lead somewhere useful.

About the author

David Anderson

As chair, David focuses on evidence, accountability and progress. He supports efforts to ensure that the voices and experiences of children, young people and families remain central to how Scotland delievers its commitment to keep the promise.

He brings  experience in children's services, social policy and community development and, with his wife Anne-Sophie, runs a seven hectare theraputic farm providing animal assisted education and care for children and young people.